A (disability) politics of learning to contain…

Journal ArticleI have been lucky enough to write an article with the wonderful Jen Slater, which has just been released today. The article, entitled ‘Like, pissing yourself is not a particularly attractive quality, let’s be honest’: Learning to contain through youth, adulthood, disability and sexuality, has been published in the journal Sexualities. Sadly, this article is not ‘Open Access’, which means not everyone can access it for free. However, if you pop me an email (k.liddiard@sheffield.ac.uk) I will happily send a free copy. Excitingly, the article was published as part of a Special Issue, Disability and Sexual Corporeality, edited by Barbara Pini, Vicki Crowley, and Cassandra Loeser. You can read their introductory article here.

In this blog post, Jen and I offer a shorter, abridged and more accessible version of the article, which we originally wrote for brilliant disability publication Disability Now. Sadly, since this time Disability Now has now closed, so we offer it below:

“Pissing yourself is not the most attractive quality, let’s be honest”: Young disabled people and “growing up”

There are certain ways that we are expected to “be” and “act” as adults. However, in reality, all adults are different and have different expectations put upon them, dependent upon time, place and social positioning (e.g. gender; race; age; class; disability status). Disabled people growing-up can receive conflicting messages from society (including the media, families, school and so on). Sometimes this is an oppressive message of being ‘abnormal’, and sometimes it is a message of being ‘just the same as everybody else’, which can not only be practically difficult, but reinforces the need to “fit in”. In this article we share some things young people said about gender, sex and growing up in our separate research studies.

Jenny’s research involved spending time with young disabled people in order to think about youth and disability. When she was doing her research Jenny, a non-disabled queer young woman, was going out with her disabled friends, Embla and Freyja. Jenny wrote this in her field notes:

‘Embla’s arrives to pick me up so I rush out. Freyja’s going to meet us later, Embla tells me: she still needs to do her makeup. She takes ages doing her make-up, so will be late. I turn to look at Embla: she’s wearing a black dress, leather jacket, heeled boots, face made-up, and hair done. Nothing unusual there, she always looks great. I catch a glimpse of myself in the rear-view mirror: make-up-less, hair a mess. “You look nice”, I say to Embla, “I’m going to feel a right scruff coming out with you two”. “Don’t worry about it”, Embla reassures me, “it’s okay for you, you’re not disabled. I have to get dressed up; don’t want to live the disability stereotype!’

Jenny had many conversations with Freyja and Embla about the different expectations put on them as young women. Whilst for Jenny, choosing to not get dressed-up could be considered a challenge to “feminine beauty”, Embla and Freyja felt that as women with visible impairments it was a more radical decision to assert themselves as young women. This meant always wearing feminine clothing and make-up. Although this was a conscious political act, they also felt that taking the “not bothering” option would (as Embla put it) meant “living the stereotype of the cute little disabled girl”. Therefore, they had little opportunity to ‘not bother’ getting dressed up as not being considered a “woman” could also lead to assumptions of them not being sexual.

This worry became clear for Molly, a 21-year-old disabled woman. She told Jenny a story of her 16-year-old self. Molly was a swimmer and wanted to start taking the pill so that her periods would be predictable and not get in the way of her swimming. She went to the doctor, who was happy to prescribe the pill. However, when running through his list of questions he became embarrassed, replying:

“Erm… I’m really sorry but I’ve, erm, got to ask you this… and I know, well, of course you’re not, I mean, I know you’re not, but I do have to ask, you’re not sexually active… are you?”

There is an assumption here of Molly not being sexual. Often the idea presented to us of sex is that it is an intimate act that happens between two people. There is an assumption of “independence” which relates to how we think about adulthood, but how does this work if you are a young disabled person who uses personal care?

Kirsty researched disabled people’s experiences of sexual life. Young people told her that one of the most difficult parts of being a young disabled person can be the lack of privacy this can bring. Lots of young people can lack privacy, but for young disabled people, particularly those who required personal care from others, privacy was something that often had to be fought for. Some young people in Kirsty’s research said that they felt their maturing bodies weren’t their own; that they felt incredible amounts of shame if they accidentally ejaculated during personal care; or if they couldn’t make it to the loo in time. Often, this impacted the ways in which they felt about their gender and sexual identity. As Julie said when talking speaking about the shame she often felt as a woman, “…pissing yourself is not a particularly attractive quality, let’s be honest”. Yet, where does this shame come from? And what impact can it have?

The feeling of shame doesn’t come from within us, but comes from a society and culture which dictates what our bodies have to do and be in order to be considered “adult” (and especially “woman”). Culturally, we associate “leakiness” (for want of a better word) with babies and older people, and we consider any talk of wee, poo, and ejaculate “improper” in “polite society”. We are shamed by the very silencing of these realities of our lives and bodies. This often went further. Some disabled young people in Kirsty’s research could be very humiliated by other people’s reactions to these bodily realities:

Abram: “My dad was doing all my caring… I used to get quite a lot of erections and ejaculate quite a lot during the night and he mentioned it to my mum who thought it was a problem and [said] “Should we call the GP?” and it was like, “Mum, mum, it’s…not a medical problem!”

To avoid feeling shame, young people in Kirsty’s research came up with particular strategies to cope, yet these strategies were often painful, difficult and/or took lots of work and worry. For example, some said they dramatically regulated their fluid intake (which could cause pain); some changed catheter types; others spent lots of time emptying their bladder and bowels before sex, just to fit in with what our common ideas of what it means to be “sexy”. Ironically, most said that such strategies could hinder how relaxed and confident they felt during sex, their ability to enjoy sex and their overall experiences of sexual pleasure.

To sum up a little, our purpose in this short article was to raise some of the unspoken issues that can matter to young disabled people, or certainly the ones that we spoke to. It’s clear that there needs to be more conversations with disabled (and non-disabled) young people, but also with parents, practitioners and so on, around the different ways that we can ‘do’ gender and sexuality as adults and young people. Importantly, these conversations need to take into account the ways in which our bodies work differently. Accepting and broadening our ideas about what it means to be “adult” is one way, we think, to relieve disabled young people of the shame, labour, and worry that can be experienced through growing up.

Jenny Slater, Department of Education, Childhood and Inclusion (DECI), Sheffield Hallam University

Kirsty Liddiard, School of Education, and iHuman, University of Sheffield




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